Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Tuesday, February 17, 2015

Date Night

Nope, not what you're thinking =P At least if you're imagining a nice dinner at a restaurant and a movie...apparently Nick and I enjoy spending our time together at the ER when we aren't at home...maybe we should re-think our version of date night...I don't think that was covered in our marriage mentoring...

Anyway, yes, unfortunately we spent another night in the ER yesterday. Thankfully it was just in and out and I was not admitted so that was good. And when I say in and out, I mean sitting there about 4 hours just waiting for most of it. What happened this time you might ask?

Let's just say we found out that Epipens really do work...and they work FAST!

Monday nights are the women's Bible study at our church that I'm signed up for. Notice that I said signed up for, not go to each week...I wish I went each week, but some weeks I end up being too sick to go. We just covered week 6 last night and I think that was only my second time going. Anyway, I felt off all day yesterday, but not to the point where I felt like I was in danger or out of it. My symptoms started to get a bit worse in the evening, but I still felt okay. I deal with various symptoms on a daily basis, so just sucking it up and dealing with them is what I'm used to doing, even when they're a bit different from what's "normal" for me.

Nick offered to drop me off at Bible study (what an amazing husband I have =P) since he was going to go to a co-workers house to help him with some remodeling work. I started feeling a bit worse on the way to Bible study, but took some meds and hoped things would pass. Nick and I agreed that if things got worse I'd call him and he would pick me up early.

The first half hour or forty-five minutes were okay. Things were getting a bit worse, the meds didn't seem to be working, but I still felt okay enough to participate in our table discussion. Toward the end of table time, I started to really have trouble breathing and was getting bad stomach cramping and feeling dizzy and lightheaded. At that point, I started to get a bit scared because all the symptoms progressed pretty quickly all of a sudden and I wasn't sure what was going on. I texted Nick, but we found out later the message didn't actually send...

A friend of ours who sits at the next table is an ER nurse so she sat with me for a bit and helped keep me calm so I wouldn't make things worse just by being anxious. She called Nick and explained the situation. As we were waiting for Nick, things were okay, but I could feel my chest and throat getting tighter and I felt more nauseas and dizzy, even though I was sitting on the ground.

When Nick got there, he made the decision to call the ambulance to take me to the ER instead of driving me himself. It was at that point that he pulled out the Epipens just in case we decided to use them. Up until last night, I've been scared to use the Epipen...almost more than I've been scared of the allergic reaction. I really didn't want him to have to use it on me if we could avoid it. While we were waiting for the ambulance, though, my throat started feeling even tighter and I started having trouble swallowing. That was our cut off. Trouble swallowing or serious breathing issues other than just coughing or wheezing means Epi, no questions asked. Plus, at that point, I was getting really scared and anxious because I couldn't really swallow which was making things worse.

Let me just say, I have gotten over my fear of the Epipen. It made a HUGE difference. Within 2-3 minutes after being stabbed in the leg with a giant needle (which I felt, but it didn't really hurt), I could breathe almost normally and swallow much better. My nausea calmed down and I could sit up without feeling like the world was spinning. The paramedics arrived about 5 minutes later, and at that point, I was doing much better. The got me loaded up, started an IV, and got me some more medication and took me to the ER. In the ambulance I started having some throat tightening again and nausea and itching, but it never progressed past that. In the ER they followed the emergency protocol that Dr. Afrin had given me to stabilize my mast cells after an anaphylactic reaction, and I started feeling better, just sleepy due to all the meds in my system. Because anaphylaxis can sometimes return a few hours after the initial reaction, they kept me in the ER for about 3 hours just to monitor me and make sure everything was okay before sending me home.

So that was our exciting "date night!" In case you were wondering, I don't recommend it...

Something I do want to mention for any other MCAS or rare disease patients that may read this. I have created a set of "flip card" or index cards with all my relevant medical information on it that paramedics or nurses and doctors can use to get up to date on my issues when I'm not able to speak for myself. I have multiple cards all with different information on them. Here's what I've put on each on so if anyone is interested in making their own, this could be a template for you to use:

1) The first card has a short paragraph explaining that I have an unusual medical condition and often present with atypical symptoms. It also says that everything on the other cards was written based on my doctor's recommendations and that I appreciate them following his recommendations.
2) The second card has my personal information (name, birthday, address, emergency contacts) and my medical conditions (MCAS, GP, POTS, RS)
3) Next is my medication list. On this I specify what each medication I'm taking is for, the dose, and how often I take it each day. I also list any supplements that I am taking.
4) Physician information. I have 5 doctors listed, my primary care doctor, GI, MCAS, neurologist, and asthma. I have where they practice and their phone number.
5) Allergies - this is a big one. If you have any allergies that won't fit on a bracelet, absolutely carry this with you. I have my food allergies listed and medication allergies. I also put on this card other medications to avoid due to having MCAS. At the bottom I put a short sentence saying that I am EXTREMELY sensitive to medications and that they need to start with low doses and increase as needed.
6) The next card has my "ER Protocol" on it. Because MCAS is a systemic issue, one of Dr. Afrin's recommendations was to receive certain medications ANY time I end up in the ER regardless of the reason to keep a MCAS reaction from exacerbating whatever issue I was dealing with. So I have at the top my standard treatment for any ER visit. Then for me I also have instructions for anaphylaxis or a GI issue.
7) The last card has other medical information on it that may be relevant but doesn't fit anywhere else. I have my height, weight, normal resting HR, normal resting BP, and normal temperature since I typically run low on everything, so a "normal" value would be high for me. I also have a pre-medication procedure on there for any medical procedures or radiological scans with dye.This is another MCAS protocol to stabilize my mast cells and prevent reactions.

So those are my medical info cards. I keep them in my backpack in a red neoprene bag that has a medical symbol on it and says mast cell disease on the front. I also carry a USB drive that has relevant imaging and doctor's notes on it in case that is useful. Since I've made these cards, every paramedic and doctor I've seen has said they are a really good idea for anyone with an unusual medical condition. The EMT in the ambulance couldn't even pronounce gastroparesis so I know he had no idea what that was, and the doctor in the ER had never heard of MCAS. But because I had these cards, I was able to get the treatment I needed and avoided an admission to the hospital. Today I'm feeling pretty good, other than my leg being sore where I got stabbed =P